SEER Inquiry System - Search

Patient was diagnosed with smoldering myeloma in October 2021 and put on surveillance. In May 2024, the patient became symptomatic and started chemotherapy.

Is the date of diagnosis in 2021, with date of first treatment with chemotherapy in 2024? Or is active surveillance first course and treatment with chemotherapy as second course in 2024?

A right breast lumpectomy identified a spindle cell neoplasm with CLCN6::BRAF fusion. The diagnosis comment states, "There is limited data on spindle cell neoplasms with this specific fusion, therefore the outcome/malignant potential is unclear. The lesion is well circumscribed with low grade morphology but shows increased cellularity and mitotic activity that reaches 40 mitoses per 10 high power fields, which may be better considered as sarcoma for therapy purposes.” The physician clinically calls it a spindle cell sarcoma. Is this a reportable emerging sarcoma histology?

2026 SEER Manual Appendix E states PI-RADS (4 and 5) are reportable; they can be used to code the diagnosis date.

The Date of Diagnosis Coding Instruction 3 in the SEER Manual states:The first diagnosis of cancer may be clinical (i.e., based on clinical findings or physician’s documentation) Note: Do not change the date of diagnosis when a clinical diagnosis is subsequently confirmed by positive histology or cytology.

2026 STORE Manual states:

PI-RADS, BI-RADS, LI-RADs alone are not reportable for CoC. PI-RADS, BI-RADS, L-RADS confirmed with biopsy or physician statement are reportable to CoC. Date of diagnosis is the date of the positive biopsy or definitive statement from physician.

Example: 01/04/2023 MRI identified both PI-RADS 4 and 5 lesions bilaterally. No work-up immediately followed and there is no chart information to account for the delay. The patient was seen again by urology and a 05/20/2024 biopsy proved adenocarcinoma. The patient underwent a prostatectomy approximately 6 months after biopsy on 01/13/2025. Biopsy diagnosis followed MRI diagnosis more than 16 months later and the plan was for active treatment.

When further work-up does not shortly follow the MRI, and no information is available to the central registry to account for the delay, should the date of the biopsy be used to code diagnosis date?

Using the SEER PI-RADS diagnosis in these cases makes it appear as if any first course treatment is often greater than 1 year after "diagnosis," when it is really only approximately 6 months after the biopsy.

Which source should be used to code diagnosis date in these cases?

Case 1: 01/04/2023 MRI identified both PI-RADS 4 and 5 lesions bilaterally. No work-up immediately followed and there is no chart information to account for the delay. The patient was seen again by urology and a 05/20/2024 biopsy proved adenocarcinoma. The patient underwent a prostatectomy approximately 6 months after biopsy on 01/13/2025. Biopsy diagnosis followed MRI diagnosis more than 16 months later and the plan was for active treatment.

Case 2: 02/05/2024 MRI identified a PI-RADS 5 lesion. No work-up immediately followed and there is no chart information to account for the delay. The patient was seen again by urology and a 08/29/2024 biopsy proved adenocarcinoma. After consultation with the urologist, active surveillance was recommended on 01/27/2025. Biopsy diagnosis followed MRI diagnosis more than 6 months later and the plan was for active surveillance.

The patient has an overlapping sinonasal tumor and only underwent diagnostic biopsies of the ethmoid sinus component. Neither biopsy can be determined to be the more representative specimen. The initial biopsy, addendum diagnosis, states there are features in between olfactory neuroblastoma and large cell neuroendocrine carcinoma. The addendum comment states the findings, "makes the distinction between olfactory neuroblastoma (ONB) and neuroendocrine carcinoma difficult."

The final diagnosis on the repeat biopsy (approx. 2 weeks later) was high grade neuroendocrine carcinoma, but the diagnosis comment states, "There are no features to suggest underlying olfactory neuroblastoma; however, the material may not be representative of the entire tumor." The managing physician states this is most consistent with olfactory neuroblastoma (esthesioneuroblastoma) in the medical record.

If this were a mixed histology tumor, there is no applicable H Rule in the Head & Neck schema. It is unclear which biopsy diagnosis to use since there is conflicting information. Should this be coded as an olfactory neuroblastoma per the initial biopsy diagnosis and the diagnosis provided by the physician? Or should this be a high grade neuroendocrine carcinoma as it is likely the tumor component with the worst prognosis?